Self-Directed Support: Draft Bill Consultation Response

SELF-DIRECTED SUPPORT: DRAFT BILL CONSULTATION RESPONSE

1. Capability Scotland welcomes the opportunity to respond to the public consultation on this draft legislation.

1. Capability Scotland is one of Scotland’s leading providers of employment, education and support services to disabled people, their families and carers. The organisation’s direct service provision is combined with campaigning, consultancy and advice to ensure that the organisation functions as an ally of disabled people as they strive to gain full equality, choice and control in their lives.

1. Our vision is that Capability will be a major ally in supporting disabled people to achieve full equality and to have choice and control of their lives by 2020.

1. Our mission is to transform people’s expectations of what is possible and ensure that disabled people achieve equality.

1. Our core values are:

• Sensitive and responsive: while ensuring that disabled people are at the centre of all we do, we will address the concerns of all our stakeholders.
• Choice and excellence: we will ensure that all of our staff are committed to providing the best options possible.
• Dignity and respect: we will strive to ensure that everyone is treated with dignity and respect.
• Openness and transparency: we have a responsibility to be accountable to stakeholders.
• Teamwork and partnership: we work in a co-ordinated and complementary way internally and externally.

OBJECTIVES FOR THE DRAFT BILL

Question 1(a) What are your views on the objectives that we have set for the Bill?

Question 1 (b) Do you think that the draft Bill meets the objectives that we have set? If not, why not and how should the Bill change in order to meet them?

It is our view that the draft Bill meets the set objectives of providing a positive, empowering legal framework of care and support, reformulating the balance in the legislation between the citizen and the state and being clear to people, practitioners and providers. These objectives provide clarity of purpose for the Bill.

We recognize the new emphasis in this legislation, and support the move towards giving disabled people more choice and control over the support they receive.

The responsibilities for practitioners and providers are clearly outlined, and logically placed within the context of a statement of fundamental principles. This ensures clarity for people, practitioners and providers, and is a point of reference for decision-makers.

We welcome simplicity in what has become an overly complex area. We think this legislation will allow organisations and the public to more easily navigate Self Directed Support (SDS). This should lead to increased and more successful uptake of SDS options, provided it is underpinned by a range of supports and an accessible promotion strategy.

The Bill is based on clear guiding principles, and, importantly, there are links to existing statute relating to the Duty of Care. This is a key theme that underpins the different ways people can take their financial allocation under SDS: Individual Budget, Individual Service Fund, Direct Payments or a combination of these options. We welcome that that the Bill makes explicit that Duty of Care underpins the different ways of managing SDS. This places clear expectations on practitioners and providers.

GENERAL PRINCIPLES

Question 2 (a) What are your views on the general principles included in the draft Bill? [Bill reference: section 1]

The general principles clearly set out the legal obligations of the local authority in enabling the supported person to participate fully in the SDS decision-making process. We strongly support all three general principles of involvement and control, informed choice and partnership, mutuality and co-production.

We support the principles ensuring that supported people have a right to access SDS as the ‘default position’.

We support the emphasis on providing assistance to enable disabled people to make informed choices about their support and we welcome the recognition that local authorities must provide service users with any assistance that is reasonably required.

We strongly believe that the principles should also outline the legal obligations of the NHS in addition to local authority obligations. This should ensure that the NHS enables the supported person to access SDS for healthcare support either as a stand-alone requirement or as part of an overall joint health and social care assessment of need.

THE SELF-DIRECTED SUPPORT FRAMEWORK

Question 3 (a) What are your views on our framework provisions? [Bill reference: Sections 2, 3, 6, 9, 13, 14 and 15]

The Framework sets out the rights of the supported person and the duties and powers of the local authority in relation to SDS. The obligation on the local authority to promote SDS and implement the supported person's decision is welcome. Feedback from people who use Capability Scotland services and our staff suggests that resource allocation systems can often leave them with budgets which are much too small to purchase the services required to live full and rewarding lives. The setting out of local authorities’ obligations regarding the review of assessed need is therefore crucial.

However we found section 2 to be disappointing, as it appears to only offer the supported person the ability to purchase their own support by means of a Direct Payment. It does not appear that a supported person can choose to purchase their own support through an Individual Budget. The option in relation to an Individual Budget seems to require that the local authority makes the arrangements. We feel that a further option is required whereby an individual can purchase their own support though an Individual Budget.

In particular, 3 (b) Do you think that the rights, duties, powers and choices set out in the Bill are the right ones, specifically the four options, the duty on local authorities to provide those four options and the duty to provide the adult‘s preferred option?

As stated above, we think that a further option is required allowing an individual to purchase their own support though an Individual Budget. Otherwise, yes, we agree that the duties, powers and choices set out in the Bill set out in the Bill are the right ones.

Failure to impose the duty on local authorities to provide the service user’s preferred option would render SDS policy ineffective.

3 (c) Is there anything that you would change or do you think that something is missing from this legislative framework.

We believe that the Bill should be amended to add a requirement on local authorities to provide clear information to disabled people about all SDS options. Capability carried out research on the awareness and perceptions of SDS in 2009 on behalf of the Scottish Government. This highlighted a lack of clarity about some of the key aspects of SDS from a wide range of different respondents including day service attendees, supported employees, residential service users, carers and parents. Feedback we have received subsequent to the research has confirmed an ongoing lack of clarity.

We also think that there should be reference to the duties of the NHS in respect of SDS for the purpose of delivering healthcare, either as a stand-alone support, or as part of a joint health and social care assessment.

Section 16 of the Bill refers to local authority functions being delegated to an NHS body. However the Bill does not require the NHS to have an obligation to consider SDS as a patient right. We think this should be addressed.

We think that the bill needs more detail on accountability for how SDS money is used.

There is little detail about when the supported person, their ‘appropriate person’ or carer is in contravention of the regulations and has not used the funding received to pay the provider for services received. This issue was raised in feedback by service users and our staff, based on actual examples of issues with other individualised funding such as ILF, which resulted in outstanding bills of thousands of pounds. In circumstances like this, who becomes liable for the payment to the service provider?

There is currently no detail in the bill about what happens if the provider of a service ends up charging more than the Local Authority’s “reasonable estimate of the cost of the service”. Who then becomes liable for the additional payment. The Local Authority or the supported person?

LINKS TO HEALTH, HOUSING AND BEYOND

Question 4(a) What are your views on section 16 within the draft Bill? In particular, do you think that there should be further legislative provisions relating to self-directed support, individual care packages and joint working between social care, health and beyond? If so, what should be added and why?

Section 16 allows the delegation of prescribed functions between local authorities and NHS bodies, and the making of payments and establishment of pooled budgets in connection with the delegation.

We think that effective implementation and monitoring of such delegated functions should be supported by the establishment and continuing development of Community Health and Care Partnerships with joint accountability for such operations. Where these are not in place, monitoring arrangements through the joint planning process may need to be developed further.

Further legislative provision should be considered, clearly setting out the obligations of the NHS in respect of patients wishing to access SDS for the delivery of healthcare identified as part of a joint assessment, or as a stand-alone requirement.

CHILDREN AND YOUNG PEOPLE

Question 5(a) What are your views on the provisions relating to self-directed support for children and young people? [Bill reference: section 8]

We welcome the provision in the Bill and in particular the acknowledgement that children often live in the context of a family and that meeting of the child’s needs and the wider families needs can be interrelated. However it will be important that the needs of the family/ carer and the needs of the child are assessed and funded through separate mechanisms. This will help to ensure that the resources are allocated in accordance with the desires of these separate but interrelated parties and protect against the overall pot of money being subsumed into ‘family funds’.

The involvement of children in decision making will be an important underpinning principle and explicit reference to the 1995 Children Scotland Act in this regard will be helpful.

For those children whose families play a less active role in care giving, such as some of the those in long stay residential care, it will be important to ensure the same access to independent advice and support as an enabler to making use of self directed support. Many such children will have the state or third party organisation as the primary care giver and there may be vested interest in maintaining the status quo.

Question 5(b) Do you agree that all forms of self-directed support should be available to children, young people and their families, and that they should have the same options as adults directing their own care and support?

Yes. However, implications for out of authority education placements will need to be carefully considered. Young people may wish to stay in specialist/ residential provision to the age of 19 years because they feel secure and safe and are likely to receive a higher level of engagement and support than they will when entering adult social care. The relationship between state funding for specialist (residential) education and self directed support and the implications for young people will need to be carefully considered.

Question 5(c) Do you think that sixteen and seventeen year olds should be empowered to direct their own support?

Yes. We think this is consistent with the logic and aims of Self Directed Support.

We note however that the Social Work (Scotland) Act 1968refers to people aged 18 and over. This would have to be reviewed to allow young people aged 16 and 17 to access SDS in their own right.

Question 5 (d) What are your views on how the various other provisions within the Bill apply to children and young people? For example, are there any specific circumstances where you feel that a particular provision should not apply to children and young people‘s support?

We do not think there any specific circumstances a particular provision should not apply to children and young people‘s support.

PEOPLE WHO NEED HELP TO DIRECT THEIR SUPPORT

Question 6(a) What are your views on providing a power to local authorities to facilitate an appropriate person arrangement where guardianship or power of attorney is not in place and where such applications under AWI procedure would be disproportionate? [Bill reference: sections 10, 11 and 12]

We think the general principle of ensuring disabled people have proper assistance to direct their support is good.

We think it is helpful that the Bill clearly places assistance for service users by local authorities within the ‘duty of care’ framework of other legislation. We think this gives clarity to people, practitioners and providers which should, in turn, help deliver good quality outcomes.

We support the Bill’s intention of providing local authorities with a discretionary power to allow others to direct an adult‘s support and, where necessary, to direct support on another person‘s behalf.

We recognise these powers are not intended to affect the Adults with Incapacity (AWI) procedure.

We agree that the first priority should be to obtain an informed decision from the adults themselves. We think however it is important to link to best practice guidance in the AWI procedure which highlights a number of practical steps that local authorities can take.

We recognise that the Bill deliberately does not define the ‘appropriate adult’ through a desire to reduce complexity and bureaucracy, but we have some concerns about the practice implications of this lack of clarity.

One concern relates to the complexity of the SDS process. Under SDS, service users can take their financial allocation in a variety of ways: as an Individual Budget, as an Individual Service Fund, as Direct Payments or in a combination of these options. Each of these options has a variety of management requirements. It is likely that this will result in some complex care packages which require detailed management.

In the case of people subject to AWI, Guardians or Power of Attorneys have responsibility for specific decisions, and are accountable to the Office of the Public Guardian, who are satisfied that they have the ability to take those decisions. We are concerned that the lack of clarity over the definition of ‘appropriate persons’ may lead to people outwith the AWI procedure having a less skilled ‘voice’ acting in their interests, thereby increasing their disadvantage.

Feedback we have received also suggests that people are worried about the potential role of service brokers. We are concerned that without a clear definition, service brokers may in practice end up filling the role of ‘appropriate persons’. This may also have financial implications for service users.

More clarity is needed on the definitions in Section 10 ‘Assistance for service users’. The Bill says that local authorities can provide an ‘appropriate person’ where:

“it appears to the authority that the service-user would benefit from assistance from another person in relation to making decisions about relevant matters because of -

(i)mental disorder, or

(ii)difficulties in communicating due to physical disability.”

While the Executive Summary says:

“The appropriate person should only be considered where the local authority conclude that an adult needs assistance in directing some or all of the elements of their own support due to a mental disorder or disability that prevents the person from being able to make the necessary decision.”

This appears to suggest that difficulties with communication experienced by people with physical impairments is the same as that person being unable to make the necessary decision. This is not the case. Many disabled people with communication support needs have the ability to make clear and informed choices. They may need assistance with communicating their choices, but not with making the choices themselves. The issues are around communication, not capacity. We think there is a danger in using the ‘appropriate person’ power as a substitute for good quality support services being available for people with communication support needs.

Appropriate supports are often found across a range of agencies, for example Speech and Language Therapy, Assistive Technology Support Services and various voluntary sector organisations. We think this underlines the need for clear links between different agencies and joint working across social care and health, as many of these organisations are joint-funded.

Feedback from service users, carers and staff at Capability suggests that the lack of access to communication support both from NHS and Social Work is a major issue for many people, even before SDS is taken into account. This results in service users with communication support needs often getting a poorer quality service than people without.